Racefor7: A race for awareness on rare diseases

Racefor7 is a multi-city annual event that aims to raise awareness about rare diseases in India

The Organisation for Rare Diseases India (ORDI) hosted the 8th edition of Racefor7 on Sunday to raise awareness on the rare diseases community in India.

Over 2,800 participants walked, ran or cycled in solidarity for seven kilometres from St Joseph’s High School Ground to spread the message about the 7,000 known rare diseases, the estimated 70 million rare disease patients in India, and the average time of seven years that it takes to diagnose a rare disease.

Participants received T-shirts and bibs with the name of a rare disease printed on it.

Pramod Nayak, Deputy Commissioner of Customs, Kempegowda International Airport (KIA), flagged off the race, which is held to honour World Rare Disease Day, which falls on the last day of February.

The race was simultaneously held at KHS Society, Davanagere.

Prasanna Kumar Shirol, co-founder and executive director of ORDI, told DH: “There is a stigma in society about rare diseases. This makes it difficult for people with such diseases to communicate their difficulties to policymakers. Racefor7 aims to involve members of the society to publicly extend support for rare diseases so that the government takes these issues seriously.”

He acknowledged the state and union governments’ initiative to help treat patients with rare diseases under the National Policy for Rare Diseases, 2021, at government hospitals.

Racefor7 is a multi-city annual awareness event that began on February 19 in Ahmedabad, Pune and Kochi and will end on March 26 after completing races in a total of 13 cities.

ORDI has a rare disease clinic on Pipeline Road, Mahalakshmi Layout. People can reach out on the helpline number: 8892555000.